Intersections of Mental and Physical Health: Value of Online Experiences

1. Intersections of mental and physical health: Healthtalk Australia and the value of online health and illness experiences Kate Johnston-Ataata, Dave Peters, Nicholas Hill, Jacinthe Flore & Renata Kokanović Equally Well conference 2019 28-29 March RMIT University, Melbourne

2. Online health and illness experiences: Why do they matter? • 1. Information, support, reassurance for: • other people with the same health condition • family and friends • 2. Information and support for person-centred care for: • health & allied health practitioners • 3. Evidence about what is and isn’t working in our healthcare system for: • health service providers • policymakers Photo by Tinh Khuong on Unsplash

3. Online health and illness experiences: Where are they?

4. Introducing Healthtalk Australia

5. Who are we?- A research consortium established 2012 between RMIT, USyd, Monash, UNSW - Member of an international network of universities / organisations conducting similar research in 13 countries and 9 languages (DIPEx International)MissionTo use the power of individual stories to understand and improve healthcare for all Australians, placing the person at the centre stage of healthcare improvement and reform.What do we do?-conduct qualitative research on experiences of health and illness (narrative interviews on film, audio or text)- use interview data to build online resources to support and inform people with lived experience, their families and friends, and inform HPs / service providers / policymakers

6. Australia: 8 HTA online resources developed so far (348 stories)Four mental health online resources:- Depression & Recovery - Mental Health and Supported Decision Making: Lived Experience perspectives - Mental Health: Carers’ Experiences - Emotional Experiences of Early Parenthood (section on PND)Internationally: 14 Healthtalk online resources on mental health (of 156 total) across 6 countriesDepression, psychosis, eating disorders, mental health among immigrant communities, experiences of taking antidepressants

7. \ • Methodology and research approach • Detailed, rigorous, proven • Narrative interviews recorded on film / audio with ~ 30 participants • recruited to achieve widest range of illness experience & demographic / sociocultural background • Collaborative approach • Advisory Group • Industry partnerships

8. Industry partners & collaboratorsGovernment bodies: Healthdirect Australia National Mental Health Commission Victorian Department of Health & Human Services (DHHS) NGOs: beyondblue Mental Health Victoria Mind Australia Neami National Private Mental Health Consumer Carer Network (Australia) SANE Australia Spectrum Tandem Carers Victorian Mental Illness Awareness Council Wellways Australasian Menopause Society Breast Cancer Network Australia Endocrine Society of Australia National Breast Cancer Foundation Women’s Health VictoriaHealth services:Hunter New England Area Health Service Monash Health Orygen Youth Health

9. Knowledge translation:- Co-design of health information / education resources- Endorsement by relevant professional bodies / government agencies- Used for training by other organisations- Testimonials:I wish to express my appreciation of your website.... the personal stories are more powerful than even the best research. Increases our understanding and therefore better informs how we engage with others, particularly when coming from a service provider position.L Walker, Helping Minds, February 2017

10. What makes Healthtalk Australia’s online resources unique?1. Extensive Advisory Group & industry partner input and involvement2. Breadth of experiences solicited3. Attention to protection of privacy of participants4. Stories of health and illness experiences told in the context of people’s overall lives5. Experiences analysed and presented by both theme and by individual story6. Interviewees presented naturalistically7. Experiential and clinical information combined (‘one-stop-shop’)8. All health-related experiential information checked by clinicians9. Stories / information presented in a non-judgemental manner10. No commercial funding

11. Stories of intersections of mental health and physical health

12. Mental Health and Supported Decision-Making project (ARC LP 2014-2018) CIs: Renata Kokanović Bernadette McSherry Lisa Brophy Helen Herrman Partners: DHHS, Mind Australia, Neami National, Wellways, VMIAC, Tandem Depression & Recovery project (ARC LP 2010-2012) CIs: Renata Kokanović Jane Gunn Sue Ziebland Partner: beyondblue

13. Ralph (Depression & Recovery project) A bad day would be just miserable, going to bed crying for no reason at all, with the light on, because I didn't want the light off. Not wanting to go out, not wanting to have friends around. Not going to play tennis. In fact even at one stage I couldn't bring myself around to plan a holiday. It just felt too daunting to have a holiday. This is in America – due to come up to summer vacation and I wanted to go on holidays – or sorry the family did – because that was what we were there for, besides work - but I thought, ‘I don't know how am I going to this, I don’t know how I’m going to do it. Strange country, driving, other side of the road, new places, I can't do it.’ Well there's depression of course, and there's anxiety; panic attacks. There's the crying spells. There was the tingling in the hands or the arms. Numbness in my back; numbness in my back; numbness in the legs; difficulty in walking - feeling that my gait's not quite right; not sleeping of course; feeling angry; uncoordinated sometimes.

14. Kate (Emotional Experiences of Early Parenthood study) I think one of the things that came out of my first period of depression was just how important exercise was to me, although one of the signs that I was becoming depressed would was that I was exercising frantically and I was really, I lost a whole lot of weight and my periods stopped and I got way too thin but I was, you know, swimming 1500 metres and running about six k’s every day. So it became clear that I was using the endorphins from that to cope, which was just too much, I was just doing way too much and not, and not eating, just drinking instead, it was just an awful kind of cocktail. But I did, when I toned that all down it became clear that exercise was something that I needed to schedule in and, although it’s terribly hard when you’re tired, that’s the one thing that I will, you know – there’s a crèche at our pool and though it’s not a particularly state-of-the-art arrangement, they’re safe, it’s only 20 minutes I’m going to be in the pool, maximum half an hour, just to get that headspace. Sometimes when my husband gets home, even if it’s 7.30 at night I’ll go for a run, just to get out and sometimes I don’t run, sometimes I walk. But I have found that for me that’s really important for levelling my mood and for cleansing stuff out.

15. Luana – Mental Health and Supported Decision-Making project Yeah, I spoke to a staff member from [mental health organisation] who was really good and helped me in what to say to the psychiatrist. Because even though you know I’m an articulate person and I’ve studied a university degree and worked in the public service, it’s very hard to know what to say to the psychiatrist. Because they’ll use any bit of emotion in some instances against you. When I was trying to get off my CTO the previous time I’d been to see them, I’d been quite argumentative about lactating. So I’d been saying that I wanted my medication reduced to stop the lactating. But there was an argument, so they used that against me and said, “Oh, last time you came here you were angry.” So – as trying to sort of justify the CTO, and I thought - I wasn’t just lactating a small amount, it was quite a large amount and it was an embarrassing side effect. So that’s why I came across as angry. But yeah, to use that emotion against me was really – I thought that was quite unfair. So luckily I was told what to say to [mental health organisation] to appear like I was calm and in control.

16. The Mental Health and Supported Decision-Making Project: An Advisory Group member and research participant’s perspective

18. Interested in collaborating? Chat to us at morning tea or send us an email!Healthtalk Australia – Key PeopleDirector Renata KokanovićCoordinator Kate Johnston-Ataata (kate.johnston-ataata@rmit.edu.au)http://healthtalkaustralia.org/@healthtalkaus